Many national and international public and private initiatives are forming to collect and share data on a large scale for research and clinical use. Collectively, these efforts may lead to the creation of a medical information commons, a networked environment in which diverse sources of health, medical, and genomic data on large populations become widely shared resources. The success and value of such a commons will depend on development of policies and practices for effective governance that address barriers to data sharing and are developed with informed input from patients and members of the public whose data may populate it.
The objective of this project is to engage expert stakeholders to inform policy decisions about effective governance for data sharing, while using deliberative methods to obtain informed public input to ensure that the values, rights and interests of individuals whose data may populate the information commons are represented.
Supported by: R01HG008918, National Human Genome Research Institute, NIH
Advisory Council Meeting - March 2-3, 2016
Academic and industry leaders from healthcare systems, clinical labs, technology companies, academia, government and nongovernmental organizations met to provide the Advisory Committee with a platform to discuss current issues concerning data-sharing policies and practices.
Center Project Personnel
Majumder M, Guerrini CJ, Bollinger JM, Cook-Deegan R, McGuire AL. Sharing data under the 21st Century Cures Act. Genet Med. 2017. [Epub ahead of Print]
Cook-Deegan R, McGuire AL. Moving Beyond Bermuda: Sharing Data to Build a Medical Information Commons. Genome Research 27(6), 2017: 897-901.
Majumder MA, Cook-Deegan R, McGuire AL. Beyond Our Borders? Public Resistance to Global Genomic Data Sharing. PLOS Biology 14(11), 2016.
Villanueva A, Majumder MA. Hashtag Who's Missing? Lessons for Participant-Centric and Pediatric Genomic Databases. ELSI Congress. Farmington, CT. June 2017.
Villanueva A, Cook-Deegan R, Koenig BA, Deverka PA, Versalovic EM, Mcguire AL, Majumder MA. The Data Ecosystem: Current Data-Sharing Policies and Practices. ELSI Congress. Farmington, CT. June 2017. Poster Presentation.
Majumder, M. Big data sharing in precision medicine. World precision Medicine Congress. London, UK. May 2017.
Majumder M, Garrison N, Bonham V, Villanueva A. Critical Distance in ELSI Genomics Research - More Than Advocacy for the “All-Frills Yuppie Health Care Boutique"? American Society for Bioethics and Humanities annual meeting. Washington, DC. October 2016.
McGuire AL, Goldstein M, Rodriguez L, O'Donnell C. Building a Medical Information Commons: Ethical, Policy and Practical Challenges. American Society for Bioethics and Humanities annual meeting. Washington, DC, October 2016.
Villanueva, A. Genes and the Environment: Current Data Collection, Sharing and Privacy Protection Practices. American Public Health Association’s Annual Meeting, Denver, Co. November 2016. Poster Presentation.